Shriners

Today was our second trip to Shriners. I did not feel great about our first trip there which you can read about here. I ended up deciding to give them a second chance and today was better. I still can't say I'm a huge fan of the doctor she sees but overall everything went well. They were happy with her progress. The PT gave me a hip flexor stretch to add to our daily stretching but otherwise said she looked great. There was no discussion of botox and I figured there wouldn't be since her range of motion is rather good now. She was a happy camper because every time I say "Shriners" she responds with "I don't want botox!"

They asked what my biggest struggle is. I told them stability. This is the same thing I told them last time. I said that she has gotten stronger since starting school. Overall she is walking well and I got her a wheelchair for places like the zoo, however, there are a few places like the grocery store or Target that involve quite a bit of walking. It's too much to do completely on her own but yet a wheelchair is overkill so I put her in a grocery cart. They asked about forearm crutches and I told them they tried them last time she was there and she picked them up and walked away with them. So the general consensus was this:

1) Oksana will continue to grow stronger and stronger and will be able to increase the distances she can walk without assistance but right now there is a need for some help in situations with longer distances.
2) Someday she may be able to use forearm crutches but right now she is not cognitively ready to handle them. To top it off they would take so much effort and work that it's really not worth it when we just need a bit of stability in certain situations.
3) I can not continue to put her in grocery carts much longer or I'm going to throw out my back!

The decision made was to put her back in a walker just in those situations. They pulled one out to have her walk in and she did great. I'll be ordering it soon.

She also got casted for new AFO's. The ones she has are causing callouses on her big toes and are starting to show some signs of getting small. He said he could make adjustments if we didn't want to cast again. I told him if we were going to be back in 3 months to cast anyway we might as well do it while we were there. She was happy because she wanted to get hearts on them this time! They will be done in about 4 weeks.

So like I said, overall much better than last time. She has another appointment in July and she will see neurology again then too.

Here are some pictures from our day:

Playing in the waiting room:


Casting in hot pink!


The design for her new AFOs: